toddler with a vesicostomy - Is there anyone else in this situation?

[danielsmom]

Hi
My son is affected by Spina Bifida and Hydrocephelus from the age of 2 weeks until 3yrs old we catheterised him every 3 hours. This year this all changed and due to a dangerously high pressured bladder he had to have a vesicostomy. Which has caused us so many headaches and problems, it has cleared up the problems of infections and the bladder has no pressure now but nappies and wet clothes are now a constant nightmare. 3 weeks ago he started nursery school which has added to the interest as they need to learn how to deal with this as well.

Is there anyone out there who has been through this and not necessarily due to spina bifida.

We feel very isolated ( though we have 2 fantastic community nurses who are working their socks off) and know of no one else in this situation.

Many thanks

Bump for you.

Hello, so sorry I don't know specifically about your son's situation but my DD2 was born with an imperforate anus and had to have a colostomy etc so we're obsessed with nappies in this house! I've found a site called 'Extra Special Parents' very helpful and you might find parents on there with similar experiences to yours - the lady who runs it is called Debbi and she is fab - it's a private site so you just have to apply to join and you're off! I wish you all the best xx